Day 93

As you can tell from Mike's last post, we are back to getting our chemo on a regular schedule. We hit counts two weeks ago, so today was the start of 3 out of 4 weeks. Happy to report, that other than our ER scary night, things have been going well. The past 2 weeks consisted of high dose chemo on Thursdays, at home chemo through the port 4 days a week and an oral chemo at night. The first time we had this protocol, Sofia felt pretty good so we were expecting the same. Her appetite has been building and her energy level has been great! Spending our days out in the sunshine has helped everyone!! I know we still need the rain but I wouldn't be upset with the warm temps sticking around.

This past Monday we were able to start in home labs, which means the nurse comes to our house for blood work, instead of the trip to Stanford. Wow, this is so nice! Not only is it so much more convenient but Sofia loved having a real nurse at our house. She doesn't talk much in the hospital but she was Chatty Cathy with our in home nurse. After she left, Sofia and grandma went out to ride bikes, then we all went on an hour long walk, came home to have a dance party and picnic and finally she played baseball and basketball till dark with Mike. So we were a bit surprised to get the call that her hemoglobin was low and she needed a transfusion. Normally this means low energy, but not for Sofia. Tuesday we went into the hospital at 7am to get the transfusion started. Unfortunately it took over 2 hours for the blood to be ready so our 4 hour drip didn't start until almost 10am. Sofia is now known for her dance parties with the Doctors and Nurses so we had to get up and dance a few times during the day. It was a very busy day in the day hospital and I actually saw two of the moms who I reached out to our first week. Their daughters are much further into this fight but it's still a daily fight. These kids and their moms and dads don't get a day off from the "something new" or the "what is this" or the constant worry.

Today we went back in for our scheduled chemo. Sofia was so excited about today because we made 20 valentines gift bags to hand out to the kids at clinic. Sadly we only saw 2 kids so we gave some to our Doctors and nurses and left the rest at the in-patient desk for all the kids there. Today was the scary one that causes a reaction in a lot of kids. This was our 3rd time getting this one and it went smoothly. This morning I noticed a lot of new bruising on Sofia's legs so even though her platelets were only borderline low, we went ahead with a platelet transfusion. Another long day but we filled it with lots of laughs and of course, dancing. 

Knowing the chemo's she got today makes her feel pretty nauseous we will keep a steady dose of zofran and lots of water. Given that Sofia is still neutropenic we will continue our at home staycation and get strong for next week. 

Thank you for the constant prayers!! We are so blessed to have each other and all of you!